Transcript
Hello and welcome to the If We Knew Then podcast. I’m Stephen Saux.
And I’m Lori Saux. And today we’re joined again by Dr. Eric Rubenstein, an assistant professor of epidemiology at Boston University School of Public Health. Eric is one of our favorite advocates. He is a researcher. He has been a volunteer for the Special Olympics and a lifelong advocate of individuals with Down syndrome. And our last conversation was with him and his research team out of Boston. And the research team is comprised of individuals with Down syndrome, making breakthroughs that will continue forward to change the narrative of individuals with Down syndrome. This conversation is another round table of change and evolution, progress and insights that we feel so fortunate to be able to have and share with each of you today.
So welcome, Dr. Eric Rubenstein.
1:35
Hey, how are you?
Good.
Well, welcome today. Welcome back.
Thanks for having me.
Would you like to kind of just do a little catch up introduction, like a refresh like a refresh introduction?
Sure. So my name is Eric Rubenstein. I am a assistant professor at the Boston University School of Public Health where I study epidemiology. And most people these days, think of epidemiology and like COVID, and infectious disease, but it’s really, you know,
2:08
a tool to look at health and well being in populations. So you know, you go to a doctor for your health, you go for an epidemiologist, for everybody with Down syndrome is health. So I, my research focuses a lot on Down Syndrome and intellectual disability and autism. And it sort of comes from being a Special Olympics coach. So I’ve talked about this here before, but I started when I was maybe 10. And I’ve been doing it a long time. Now. You know, I joke about my win loss record not being that great. And I really shouldn’t still have a job there based on how few wins I have. But it’s fun. And it’s nice to sort of stay connected to the community. These days, I’m doing a lot of Down syndrome research. And we got a few interesting and cool projects, sort of thinking about the full population. So we have data
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based on Medicaid and Medicare
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usage. So we have, we can sort of track health, de identified we don’t have anyone’s personal information in over 100,000 people with Down syndrome in the US. So we kind of got this huge sample that we can really look at specific things that will give us a better picture. Because you kind of need to see the whole forest sometimes to get the real patterns. And just knowing a few people, you kind of have anecdotes, but sort of being able to take the step back and look at the full population, we’re able to
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sort of find trends and patterns that we wouldn’t otherwise. And then the other thing that we like to do in my group is we have what we call a co research team. So we’ve been on the podcast before where we now have seven adults with Down Syndrome who are leading their own research project under sort of my team’s guidance and support. And we’re looking at mental health, we did a survey, we’re starting our second year. And we’re probably going to start doing some interviews of health professionals and sort of letting the the people with Down syndrome drive the research agenda, they know what needs to be asked more than I ever could. So we’re letting them lead with with great success. It’s really been fantastic and so proud of the work they’ve done. And it’s really been a highlight of my career and my my time to be able to work with them like that. Well, that kind of feeds right into what a subject we want to talk about today is just having co researchers with Down syndrome, you know, using their abilities, and really taking into account their experiences when it comes to research. You talk about keeping in touch with Special Olympics and seven and surround yourself with people with Down syndrome so that this research you’re doing isn’t just strictly clinical this personality to this person is personal connection. And the fact that you see people with Down syndrome as capable researchers,
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as a researcher yourself, and then you identify that as well.
5:00
Have an asset. Oh, totally. And there are insights and
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pieces that they add to research that I wouldn’t have thought of. You know, I think that there also is sort of this, you know, ivory tower are these academics that, you know, think everybody is just in a textbook like nobody, there’s, there’s no real people, they’re only numbers. And then a co researcher gives a research talk. And they’re reminded that all the research they’re doing is about people. And these people have opinions, strong opinions and insight into what they’re doing and what they’re saying. So, this year, we’ve done a lot of that of sort of highlighting our co researchers to maybe people that do this type of work, but don’t really know people with Down syndrome, which believe it or not, there are a lot of those people.
5:56
You know, I think there’s like a anecdote, I don’t I think it was at a conference where, you know, one year at the Down Syndrome conference, they they asked, Who here know, someone with Down Syndrome and like a quarter of the room raise their hands. So I don’t know if that is still the case, hopefully not. But
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just sort of getting a seat at the table and bringing folks with Down syndrome into the room. They are completely capable of a lot of the science we do. I mean, some of the Down Syndrome research with mice models and genes, you know, I have my PhD, I can’t sit in those rooms, because I don’t understand what they’re talking about. Right. So, you know, it’s obviously got its time in place, because nobody knows everything. But when it comes into questions about health care, use and happiness and depression and employment, you know, that there really is no reason not to include people with Down syndrome, as part of the conversations part of the research team. And is that Down Syndrome research where it was only a quarter of the researchers that knew I heard that at the Down Syndrome conference that I met you all at at the 221 conference, but don’t quote me on that. But it doesn’t surprise me. If that story was 10 years old, that sounds completely right. If you’re not a clinician, if you’re not in the hospital working with this population, and you’re sort of working with mice models, or doing cellular stuff, you kind of have to go out of your way to find people. And they don’t always do that,
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like 10 years ago, what would they have been researching? You know, because it’s I just feel like it’s just recently that we have a seat at the table, and that you’re seeing, you know, Down syndrome as part of the conversation and you know,
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the inequality is really being pushed to the forefront. What was it that was being researched. And I know, this is off topic, but I just, I’m just very, very so. So it’s kind of to back up in terms of medical research, there’s sort of two approaches as what we call the the medical model, which is kind of like, you’re sick, we need to cure you, we need to understand why your cells are ask acting a certain way. Why is your mitochondria doing this when this protein is added those kinds of like, real nitty gritty biological questions, and that’s the medical model. And then there’s a social model, which is, we are people within a context of a society and a family. And, you know, you have all of these levels of interactions, and all of that matters to your health and well being. So kind of the academic and research community was in the medical model for a long time. So why do
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why do the 21st chromosomes triplicated for people with Down syndrome, what is happening within the DNA that is making that happen? There are a lot of biological medically interesting things with Down syndrome, whether it’s the Leukemia, or the Alzheimer’s disease, that it’s a very big mystery that if uncovered would have huge implications for all sorts of health care and cancer treatments and Alzheimer’s treatments. But in terms of how science works, you start with like, a zebrafish cell, which is like a small cell from this fish like creature that you can use, and then you sort of build towards humans. So the people that are starting this work, they make these animal models with the triplicated chromosome. It’s just so far from humans that it’s not it’s not their job to do it for humans. It’s sort of it gets passed along. They say, Oh, this is interesting in mice, and they say, oh, it’s interesting in mice. Let’s see if it’s interesting in cats. And then eventually, they hypothesize to the point where they’re doing drug trials and we find a good drug for Alzheimer’s. But for those people at the early stages, it is a little hard to tie into
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to individuals, especially in that context of inequities, and those things that we see as individuals and day to day things is like kind of really about the cells, which should be done. And it’s important but needs to be done in conjunction with this other work where we’re talking to people, and you know, making sure that people are happy and healthy. And health is more than just the absence of disease, you know, that there’s things that we can do to promote well being, you know, we can if we cured dementia, and
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leukemia and people downstream, that’d be amazing and huge accomplishment. But it wouldn’t get us all the way there. Right, we would still have employment issues and all of these things that solving some of the big medical mysteries doesn’t solve everything. What kind of trends do you find? Have you found in your Medicare Medicaid research? Yeah, so we have a paper coming out next month, which I can’t talk too much about, but I’ll send along when it’s out. But
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what we see is that most people with Down syndrome are on these public health insurance, which is what we sort of expected to see.
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And we see that sort of the population is aging, which is good. You know, every year the mean age is getting older, older, as people survive longer, live longer, we’re sort of getting older and older adults with Down syndrome, which is great, but will need to sort of be prepared at the service level at the sort of national level to treat this population. We not surprisingly see kind of worse indicators of poor health. So we don’t yet we’re working on like kind of the dementia is in the cancers. But we see that people with Down syndrome, die more often are more likely to go to the hospital have higher medical costs than those without Down syndrome, which is to be expected, given what we know about Down Syndrome and sort of the needs. But interestingly, it’s not particularly different from intellectual disability. So we compared people with Down syndrome to people with intellectual disability to people with neither with no developmental disability. And and usually the people with Down Syndrome and intellectual disability are pretty much the same in terms of death rate, hospitalizations,
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costs, number of visits to the doctor, which sort of implies that it’s really nothing specific to Down Syndrome that’s causing these sorts of, or indicators of health, it’s sort of the larger system, right? It’s, if it was all just dementia, and leukemia, and these specific Down Syndrome related health factors, we would see a difference with intellectual disability, but we don’t. So it sort of gets to that idea of this, you know, structural, the structural issues that these folks face that, you know, it, there are interesting complexities to Down syndrome, but we’re kind of mostly in the same boat here, when it’s sort of the big issues are employments and lack of purpose, and housing, which is really not all that much attributable to the 21st chromosome.
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So it is a research is it more reflective of the like, break breakdown in society and, and the, like,
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the propagated stereotypes and the limits like not receiving an education, which creates a individual who then can’t find employment and isn’t in a social environment and can’t create those relationships. It sounds like it’s like a downward spiral, it’s up because people are getting older, they didn’t really there was the repercussions weren’t as a parent, maybe, but now that individuals with Down syndrome are getting older, we can see the consequence of lack of inclusion and education and creating a system that supports, you know, independent living. Right, right. Well, I mean, another thing that we need to factor in is that a lot of these individuals are of low socioeconomic status, and, you know, sort of, of minoritized race where there’s all of these intersecting identities that, you know, we need to try to figure out again, is it intellectual disability, or is it being poor poor than then the comparison group, because everything kind of ties in together when you have to not have a full time job and, you know, you’re relying on Social Security and all of those things that matter? And it’s kind of the next steps we’re doing we’re going to look to see who goes to Down syndrome.
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especially clinics, kind of a hypothesis is that there may not be that many doctors, well trained in Down syndrome. So if you don’t have a good doctor, you might have to go to the doctor all the time, because they don’t know what to diagnose you it
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is. So we also think there might be some issues with like transportation and getting to the doctor. There are all kinds of things that a lot of marginalized groups in the US face. And we’re going to try to pick apart what exactly is sort of the ableism, the disability piece versus was all of the other intersecting identities. So we’re working on a project now where we’re looking to see if people from minoritized groups with Down Syndrome have worse outcomes than we would expect, based on what we know about the outcomes in minoritized groups and the outcomes in those with Down syndrome. So we know that black folks have worse outcomes than white people, we know that people with Down Syndrome have worse outcomes than people without Down syndrome. And you should be able to just add those together and find out how much risk a person a black person with Down syndrome is at for we’re looking at death, it should just be math, it should just be your the risk that you’re black, you have the risk that you have Down syndrome, and this is equal to that. But for some groups, it doesn’t work like that, that it sort of like interacts together to put a black or a person of color with downstream at a greater risk than you would expect, based on their two sort of identities. So that’s something that you know, this group is not getting the care, or there’s some factor that is causing these worse outcomes than you’d expect, which sort of leads to that idea of this intersectionality. This sort of compounding disparities sort of the impact of ableism plus racism together is just it’s kind of like the the sum is greater than the the total is greater than the sum of its parts. And we’re seeing these these poor outcomes that
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are worse than we would imagine.
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Are you doing? Is there any research? Because if you’re if you’re looking at the older community that has Down syndrome, and then I think about what their life was, like, what their limits were, especially when we’re talking about education, when we’re talking about opportunities to be employed? And is there any research being done to to compare that with individuals who are younger, or being born now? And are being put into an inclusive environment or received in education and and how they’re affected?
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Yeah, it’s a good question. It’s a bit tough with our data, we’re hoping to sort of create more avenues to this. So we have nine years of data so we can compare someone that was, you know, 21, in 2011, to 21, and 2018. But as we get further along in time, we’ll have more opportunities to do that based on your age.
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In terms of other things, like, I think there’s some sort of health indicators in our data that could be interesting to look at,
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in terms of like, do they make their annual health care visits are they taking they’re getting flu vaccines, sort of these like indicators of,
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you know, preventative health care, to see if that sort of is different between sort of generations. But we would need to also account for just general differences between generations, whether you have Down syndrome or not, you know, older folks are more likely to get their flu vaccine than younger folks.
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So that is something we can think about doing. But there’s also sort of a big push to create more cohort studies or sort of large groups of people with Down syndrome that we’re going to follow over time. So, you know, you fill out a survey every six months, maybe you talk to a researcher once a year, and then we follow you for 20 years. And now we can tie in sort of all of these things that you can only get by talking to a person with kind of our more
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health outcomes, he sort of what’s your blood pressure? Do you have dementia kind of stuff, which will be a huge gain, if we can do it the right way. You know, there are issues with sort of equity and who gets enrolled in these studies. So it’ll be a challenge to get them to be representative of the whole population with Down syndrome. But it’s worth doing because to get that information about sort of the impact of inclusion, it’s really hard to do with just sort of high level statistics. I feel like equity is is a big tip plays a big part in the outcome of an individual with Down syndrome.
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You know, one of our challenges we’ve discussed has always been the lack of equity in Liam’s education or being seen by the teachers as being equal to the other students.
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I feel like that would have a big part in in anyone’s life.
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I’m curious, you have the research team that you you have where you’re working with a group of individuals that are researchers with Down syndrome. And they’re taking the lead? How, how is that accepted amongst the medical community or other professionals?
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Yeah, it’s really interesting, you know, like, I did not come up with this idea, right. There’s great folks that have pioneered this work, you know, Ariel Schwartz, and Jessica Kramer and call her asked her out, that’s in New Hampshire and Florida and Wisconsin, but sort of when I bring it to kind of the Public Health Medical Campus, folks, it’s like, I’ve invented fire, right, like, you know, it’s, you know, this is so innovative, who would have thought that we could like, talk to people, and, you know, like, it’s, my sense is that it’s very foreign, at the moment, but in terms of like, where our culture is moving, it’s going to be the norm. That, you know, this, like, kind of the disability rights movement has is like nothing about us without us mantra, that right, you know, we need to be involved in anything that affects our lives. And I think is more,
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maybe through the internet, or whatever, get organized groups get organized. And together, whether it’s multiple sclerosis, or depression or Down syndrome, that there’s going to be more of this demand that if you’re researching about me, I need to get my input in there, because I know more than you do, who just studied from a textbook. So I think that sort of the field is there, just research in general is going to move a little more in that direction, at least in this sort of social research, I don’t think we’re going to have, you know, people with Down syndrome, dissecting the mice, unless they really like to do that, and want to do that as a career. But you know, sort of that is a specific trained skill of research that anyone can do. But it’s not, you know, having Down Syndrome doesn’t inherently add expertise to that task. But sort of these ideas of what is your life, like what’s important to measure? I think that we’re on the forefront of sort of that being the norm, where it’s almost unethical to do research without consulting with, you know, representatives of the community. No, I think of what you’re talking about health and also economic status, I think that goes along with that, too, is the region of the country that you live in. And I don’t know if it’s too early to ask what you’ve seen and research about that too. But I can think of like, you talked about a person of color, and then also having Down syndrome, how maybe those two things together, don’t add up and kind of multiplies. And then you can throw in economic status, you can throw in what part of the country you live in, and kind of how you’re seen and what benefits are there for you? Yeah, it’s a really good question, because this Medicaid data, so Medicaid is public health insurance provider for low income and disabled people. And Medicare is for older adults, but also covers a lot of disabled people, it’s like very confusing the to Medicaid covers Medicare, but Medicaid, which covers the bulk of our population with Down syndrome
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is state specific. So where you live has a direct impact on the quality of care you receive, you know, whether you can get funding to, you know, pay for transportation. And in the big scheme of things, those with Down syndrome, it’s a little more stable between
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states, you know, sort of you hear about Medicaid work requirements, and all of these cuts to Medicaid, usually, the Down Syndrome population would be pretty immune to those, but it’s still one of those things where if you invest as a state and Medicaid for everyone, everyone will do better, you know, and we’re going to look into sort of the state specific outcomes, but the numbers can get a little small, you know, with with 100,000 people with Down syndrome, in Medicaid.
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And if you divided by that, by 50, we’re looking at like, it doesn’t split like this, California has a lot and Delaware has a few, but like, we don’t have that many people in a state that we can do kind of the advanced statistics that we may need, and then region we’re working on, but it’s not exactly a great
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proxy, because states are different within regions. Right. You know, Florida is different from, I guess, Virginia wouldn’t maybe not be the same. But but there are some of these parts of the country where there’s like huge political differences, you know, if you just cross over a border,
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so we’re going to look into it and I think it is good
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it’d be really interesting. But you’re exactly you’re definitely right that there’s sort of these, what we know about people without didn’t Down syndrome is that state and state policies and sort of atmosphere surrounding this is super important to health outcomes. From the very first time I heard you speak, I’ve enjoyed your perspective.
25:21
I love that you said, when you’re talking about
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dissecting mice, and you said, and having Down Syndrome did not make you better at doing that. And that’s what, that’s why I think it’s so I think that your the way your brain works, where your mind thinks it’s so important to have someone like you
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at the helm of this research, because you’re not, you know, my, the reason why I asked this, how did the professionals do take the researchers is, you know, we experience a lot of pandering, we experience a lot of pity, we experience a lot of okay, you talk, you know, I like oh, this is gonna be cute. And we experience a lot of that. And, and I was, I think it’s that’s having you someone who I don’t feel like your brain goes there at all.
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Support supporting these researchers and, and being the one to lead them is really important.
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Because I think that you raise that bar even higher, and
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you being at the helm, can take away a lot of the
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I don’t want to say boundaries, but the limits or the thresholds that others may, from the outside looking in,
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want to or inherently place on this kind of research, I appreciate you saying that. And I think one thing I want to mention, is sort of a caveat is that I’ve been very fortunate to get my research funded, which gives me the ability to put the effort into this part of my research, right? If I was having to grind out to get grants to keep my job, I wouldn’t necessarily, this might be the kind of thing that I just like I can’t do, because I don’t get promoted. Because of it, I don’t get money because of it, where the incentives for us as researchers really are oftentimes at odds to this kind of slow, methodical community building,
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which is a problem with the system. And I think people know that, but still, you know, it’s sort of coming from a place of really good fortune that I have kind of the the financial support in my research to go about it this way. But sort of this is my this is my personal view, this is not, you know, the views of anyone but me. But I kind of get a sense that with a lot of adults with intellectual disability with Down syndrome, once they leave the school system, they’re sometimes not held to a high enough standard. They’re sort of, you know, at pandered is a good word. They’re just kind of allowed to kind of do what they want and sort of say what they want. And part of having them on the research team is having the ability to get people back on track, get them focused, tell them when they’re, you know,
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you know, they need to stop talking and
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abled people, and people without experience in this community feel awkward and bad doing that. And it’s not, you know, if it was your colleague, you wouldn’t interrupt, you just kind of put your head down and like ignore it, but it’s doing people a favor to sort of, okay, I see you’re on a tangent. I know, you don’t know when exactly to stop, I will step in and say, Oh, Megan, what do you think, right? Like, there’s that fear of maybe seeming like you’re being mean, or you’re like, there’s like this, too, there’s too much pandering is bored. It’s just like, I can’t treat them like a grown up when they’re going off on this. And I’ve been in meetings where we’ve had some sort of representatives, you know, of the community. And, you know, they have a lot of good insight, but it also can get derailed, because they’re not used to this table. And they’re not used to sort of what our goals are as a Research Board or whatever we’re doing therefore. And it’s sort of need somebody to step up and say, Thank you for your input. Let’s move on, right, it’s sort of just because they’re at the table doesn’t mean they get to rule the world because nobody gets that. And, you know, it’s not their fault that they don’t know some of these complexities of, you know, professional meetings or whatnot. But we can’t be scared to say, Oh, hey, Liam, thank you for your story. But we need to let someone else speak. Right. Like it’s not
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At the end of the world, and there’s sort of that mindset of, you know, I’m such a hero for letting them in the door. Now, I can’t do anything like now now that they’re just free to sort of, say whatever they want to say, do whatever they want to do. Whereas like, you know, if you’re working with me, we’re going to get the job done. Like, I’m not going to treat you differently. And, you know, let you run me over because you can, you know, after high school, you could probably do that to so many people who are just like, it’s just easier to let this person manipulate you into getting what they want, rather than putting your foot down. Well, it’s a it’s an everyday occurrence, I believe, that most parents that are listening right now could relate to is when I have Liam next to me, and we’re in a social setting with maybe another adult, and he does something that I correct him in or just show him the new way, you know, the correct way, I guess socially.
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There’s always the other adult looking at me going, it’s okay. And it’s fine. It’s okay. It’s okay. It’s fine. And it could be something like hugging a stranger or getting, okay. No, no, it’s not okay. You know, it’s okay. Number one, saying it like, it’s, it’s fine, like, don’t correct this person. And without the concept that Liam’s actually listening to what you’re saying, and taking in what you’re saying, and going, Oh, that’s adult, that adult saying, It’s fine for me to do this. Like, you would never do that. You would never go over someone else. And try to influence someone’s child that way. It’s and they don’t think that this person with Down syndrome is actually getting what they’re saying, like it’s a little aside or something, or they answer a really good reflection of how society views individuals with Down syndrome, though, I think that I think that having a voice is new. And, and if you look anywhere, when someone finally gets a voice, a group that’s been silenced for a very long time, when you finally it’s not, it’s not always pretty, it’s not like, it’s like when a baby is finally able to make a sound or make words it’s not, it’s not always going to it’s not the finished polished product of someone who’s always had a voice and who knows how to select their words, or can read certain cues, or has already said everything they have to say, you know, this is a voice that I don’t know, when I’m gonna be heard again, I don’t know if I’m gonna get to speak again. So it’s like when you’re first starting to get your voice, like, individuals with Down syndrome are now actually, you know, like in your research and at the table and talking in different places, it can get messy, they have not had that the support through school to have those queues in place. And society has not had the experience of looking at individuals with Down syndrome or intellectual disabilities as able and equal. Yeah, and I bet you know, sort of, in my mind, real inclusion is probably what you see with your daughter and your son, where she will call him a jerk if he’s acting like a jerk, right? You know, that that’s sort of like this idea, or we have, you know, a high school team that has people with and without disabilities, and that’s inclusion, but like, the real inclusion is when the high schooler goes up and says, like, you’re a ball hog, you need to pass the ball, right? Like, you know, that’s included, like that’s treating someone like you would whether they have a disability or not, sort of, you know, passing to the wrong team so they can score and feel good is like, not real inclusion, you know, it’s like that sibling, the siblings really show us like, that’s how you treat us. Like, they’re such a jerk right now. It’s like, yes, people are allowed to be jerks when they have Down syndrome, right like that. That’s the real inclusion is when you get to the point of holding, you know, having expectation, right, you know, it’s it’s not just about being in the room, it’s about your in the room, and you’re also held to a standard, you’re not sort of being infantilized, and, you know, being sort of a token is like, you have to be hit, you know, the, you can be a jerk, right, like, and it should be accepted that people with Down syndrome, and these other disabilities have complex personal lives, in our lives that like, they’re not
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totems of anything. And if they’re behaving like a jerk, you should tell them, they’re being a jerk. And you would hope they would do the same to you. Right? Because that’s, you know, what siblings and friends are fours does that kind of check you when you’re, you know, not being very nice. I feel like the lack of inclusion in a classroom, especially, you know, it usually stops around elementary school. If you happen to have your, your students still in the school system in middle school in high school. I think that’s when the lack of inclusion really shows from both sides because, you know, I can imagine like I didn’t have
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anybody in my school growing up? Who had Down syndrome, or intellectual disabilities that was actually in our classroom, but you can imagine, just like the adult talking to, you know, the parent going, it’s okay. Like
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teenager, a middle schooler and a high school who are going through so many things, being in the position of I don’t know what to do here, because I don’t like you.
35:29
Aside from being bullies, like the individual who really wants to interact, their hands are kind of tied to because they haven’t had the experience. And, you know, and they don’t, they don’t know what to do. And the only thing that they have really to model is the ableist model. Like that’s a you know, like, Oh, it’s okay. And hey, buddy, and we’re gonna do this and there’s no bar really, they’re like, Oh, God, we actually wouldn’t rule. Yeah, you, you’d let them like, if you let them get away with more like, I know that even when I bring Liam to Sofia’s High School, and Liam is a 13 year old boy. And, you know, and they’ll be like, a really pretty girl and he’ll, he’ll be like, I’m gonna go with you. And she’ll be like, Oh, okay. And I’m like, no, no, Liam, you don’t just like, you don’t know, this human you have, there’s like, he’s like, bypassed so many levels that, like the other high school boys are going, it’s that easy. Like, I just go, I can put my hands on me, you will be prom king. Yeah, you and me, you come, you’re you come to my house. And if he probably went to school with them, they’d be like, I guess I have to go to Liam’s house like I don’t, you know, there’s no, the the quality’s not there as far as it being a conversation, because I don’t think the expectation that he’s equal is there, like the the other students don’t anticipate that this individual is going through the same things that they’re going through, has the same emotions, the same desires, the same feelings, frustrations, they’re just maybe expressed differently, or that that inhibition is gone. Yeah. And they’re also probably feeling that they could be reprimanded if they didn’t just do what this child with Down syndrome wanted, or, you know, like, you don’t want to be the bad guy, right is the idea. So socially, we not only have our kids with Down syndrome not being taught the correct way. But we’re not teaching the rest of our kids you the correct way, because there’s very little inclusion together early on in, in school system. Yeah, and I’m, I don’t do a ton of school based research.
37:42
But it’s hard, right, like to do inclusion, to get everybody to meet their learning goals, then you have like, all different types of inclusion or non English or English as a second language learner, and like, all of these different things, it’s, it’s very hard to have that atmosphere and also meet the learning goals that are hard to meet, period, given sort of the way we do education in the US. So it’s not easy to sort of balance kind of the, the learning part of it, the textbook of the math is, you know, but sort of the interpersonal learning, it really is important, and we can do better. I don’t know how to solve them. When you’ve got like, six different levels of math skill in one classroom, that’s not my job, thankfully, because I don’t know how you go about, you know, you know, I was the kid that was like doing that night’s homework in class, like, I don’t know how teachers do it, God bless him. But, you know, to sort of handle all the different levels, it’s really hard. It’s not an easy thing to do to teach.
38:58
No, agreed. But the social part of it, I just see so much. Learning that can happen just almost without direction, just bringing people together and learning how to talk and interact and learn together. And so, I’ve seen a lot of a lot of
39:17
almost hands off learning, by just bringing people together, just where then that just becomes a commonality where we just do that we’re just all together. And there’s going to be, you know,
39:30
conflict, but that’s how we learn socially. I feel like with Liam’s friend because now he’s at a new school and he actually does get receive his education. And he has friends. I feel like one thing I usually that usually happens whenever I see him at school is I have I’ve had to remind his friends, if he’s bothering you, tell him you’re not doing anyone any favors, and you can see that they’re very uncomfortable, but I feel
40:00
Like it’s gotten,
40:02
they’re doing but they do better and better with it. But it is it is a bit of permission that that needs to be there because inclusion hasn’t really.
40:14
Inclusion isn’t a given. And, and I feel like in order to make the changes that we have to actively participate, like I’ve had to tell his teachers, I’ve had to, you know, say in an IEP, let let him get in trouble. Yeah, see how he let him experience that, like, he has to know what it feels like to disappoint someone. And I don’t, I mean, there’s like,
40:42
that, that’s a really hard thing to ask, like, Liam has to know what it feels like that, hey, you shouldn’t have done that. Let’s, you know, this is what we’re gonna do, or this is what I need you to do. And it was really like, he has a great resource teacher that when he, because he would just sometimes go to class and be like, I don’t, I don’t want to thanks. but no thanks. And people would be like, we get it. What would you like? And I’m just like, I remember the first time that happened, I was like, you get what he asked for? Well, he asked for this book, but they didn’t have we didn’t have it. So we ordered it. And I was like, Is this what you do for every student who doesn’t want to do science work? And they were like, No. And well, that would that would actually be so good for the classmates to to see him get, you know, reprimanded? Or to see him? Well, he had to do homework that night. Yeah. And it’s, it’s good for the classmates too. Because it can be a slippery slope for them, where they where they feel like, if they see everyone around them, letting them get away with everything, they’re going to do the same. And or maybe with the fear of being called a bully or mean to the child with Down syndrome.
41:46
Not let him just do whatever he wants. And so it’s, it can be a slippery slope for the classmates. But like I like I was saying is, the more the teachers, let him get in trouble, or
41:59
he gets treated equally? Yeah, treat them equally than everyone else. Well, yeah, no, I agree. And I kind of, I’ll ask you, so when he was really little, was he in daycare with typically developing kids? Was he, you know, like, were other kids? Was he he injured? Because I have a two year old and I sometimes, you know, I’m reading about daycares and stuff like that. And I’m pretty sure like, if my daughter had Down syndrome, would they let her enroll? Right? Because, unfortunately, with the daycare systems, they’re, you know, really, you know, worker shortage and all of these things, and they just like, need to get through the day. And they might see kids with disabilities as another thing that like, you just can’t function with, you know, this person needs a one to one where we can barely hire anyone, like, what was your experience when he was really little about sort of getting him into those spaces? Well, we’ve had a lawyer for Liam since he was three. So we had to fight to get him into an inclusive preschool. Most of the programs around are are pretty non inclusive. But we fought to not have him shuffled into a non inclusive preschool, because the way it works is once once they’re three, they, which didn’t happen with our daughter, they are automatically in the school system that at least has California, California, and then I’m we’ve had to fight for his place in the classroom. You know, you know, all the way until actually this last IP we had in May was the first IEP where we had didn’t when you say like inclusive preschool, that’s like a specialty preschool. That’s like, that’s not like, you know, like, shouldn’t that what a preschool is right, like, well, it was inclusive. That was a it was it was
43:55
the reason why, why Liam is not in a private school right now. Because what LAUSD did, they are supposed to pay for his education, since they denied him his right to an education. They’re supposed to pay for someone to educate him. Because he has Down syndrome, private schools won’t take limb, you know, all these other programs that they have for individuals who maybe have different needs, they won’t they use the premise of IQ to determine if they’re going to let a student and so Liam wouldn’t qualify for any of those other programs. So the preschool that he went to was, you know, it’s a it’s it was a thing, because it was a place where someone with a disability could go, but they’re around their peers. So it so you had, it was an inclusive environment where you had to pretend the kids didn’t have IEPs Yeah, or maybe more than 50% because they had to keep the ratio. They wanted to keep the ratio to where it was, you know, like a classroom so
45:00
wasn’t, it didn’t then become the other model. But um, as for a daycare, Liam did not go to daycare, but at three, because he had all those services that he had. Yeah. And we we had decided some would be home with him. And that was because we had so many services prior to three through what California has called the regional center, and they do OT PT. All through that early intervention. Early Intervention, I, I will say our friend who lives in England, she her daughter, or her son birdie goes to a preschool he does. And he just goes to preschool and right you know, his, his brother went to the preschool, and then they met birdie, and they love birdie. And they’re like, birdie has to go here. So it’s really what you want it to be. I just, I feel like that change is coming. I feel like I’m seeing more and little bits, but it’s just the beginning. So unfortunately, you do get places where if you have your child has a disability, the parents of able bodied students will like we had that in kindergarten where people were like, Why is he in our classroom? Yeah, this is again, not scientific base, this is just kind of my, my feeling. And sense is that like, five is too late for inclusion to start, right. Like at that point, the kids can talk, they can really see that something is different. We’re like, you know, my daughter has been around my Special Olympic athletes her whole life, and they love her. And they do not necessarily look like people she would see all the time, but they’re not going to be different to her. That’s just who they are. And what someone with Down syndrome looks like, where a five year old who’s meeting someone dancer for some, of course, they’re gonna say something, they’re five years old, right? Like, they’ve lived their whole life thinking people look a certain way. And then they see someone that looks different, and they’re five, right is going to be different, and they’re going to treat them different.
47:03
You know, we sort of need to get like that still moldable brain of just sort of, I’ve always known someone with Down syndrome, right. Like, that’s just what a type of person is, you know, in other disciplines, I’ve always known somebody in a wheelchair that’s just like, what people are, versus sort of being exposed. At that point where you’re already know that something’s different. And then the teacher treats them different. And, you know, kids are smart with patterns, you know, they can tell when, when something is out of the of their usual. And, you know, we have to really start young, so it just is their usual to have, you know, kids in wheelchairs and with disabilities and all of those things, because, you know, I think that it’s too late when, when they’re sort of think they know the world, you know, and think how detrimental it is for that introduction happened at 15, let’s say in high school or at 25. When you’re, you know, that person doesn’t have any skills to handle. Oh, somebody who, yeah, well, I don’t even know if I can go talk to that person. You know, I mean, you haven’t, you haven’t experienced that. It’s like, you know, it can be can be really difficult. We’ve found that the five year olds, that transition is so much smoother than the parents of the five years, right. So those five years were like, what do we say? Like they actually asked, they actually asked, What do we say to our kids? And I was like, could you print up a book that we can hand out to every school and people do it? And now I have to tell you, now I go, Okay, well, I could, that would be a nice thing, maybe as part of something like Down Syndrome Awareness, hey, here’s some things that you don’t know. And maybe now me 13 years later, I might be more able to do it. But when I just, you know, have fought for years to get my child into the classroom, and to have parents say, you know, and they didn’t even have they didn’t even this is I don’t It’s I don’t mean to be negative. They didn’t, but they sent the teacher to the teacher said, well, some parents want to know what to tell their child. And then I did have a parent say you should make one of those Shutterfly books and pass it to every student. And, and you know, but one of the wonderful things is that we have five year olds that have been with Liam started with Liam going to school. And so now in 25 years, those five year olds will be adults and have kids and won’t be asking the teacher Haddaway explained this other student to my son or daughter, you know, it’s that we are getting there. And it’s, you know, little at a time, but there’s no doubt in my mind that these classmates of Liam’s are going to have a totally different subset of skills and tools than I ever had. Right. And I think that it’s sort of a cultural moment to sort of general inclusivity in terms of gender and
50:00
It’s sexual orientation and sort of kids that have different types of families with two moms or two dads that just like,
50:08
these new generations are just going to be so much better at that. Because, you know, it’s not just the kid with Down syndrome. It’s, you know, the kid that emigrated from Iraq and the kid that has two moms and like, everybody’s sort of got this piece of them that is not this traditional American family unit
50:31
that they’re all going to talk about, and they’re all gonna recognize, and if every person had to make that booklet explaining themselves when they’re in kindergarten, you get however, many booklets, their kids in the class, right? If it’s Crohn’s disease, or if it’s diabetes, or like, everybody’s got that thing, that they’re just going to start to recognize that in each other that, oh, that’s, you know, he has Down syndrome, but he has Crohn’s, and he just moved here, because his dad’s in the military, like, everybody’s got their stuff. And, you know, I think Down syndrome is maybe a special case, because it’s so visible, right? Like, you know, you see it, you know, like, even with comparing it to autism, like, in these, you know, play space groups and stuff, like, you know, they quote, unquote, pass, right, like, the kids look the same, you don’t you don’t notice.
51:20
But, you know, when they get older, and start sharing about themselves, that everybody’s got an interesting wrinkle to themselves that, you know, is worthy of being inclusive of, and it might be something that our parents or grandparents would not have understood, or, you know, just it’s just sort of evolving with the times, I think evolution is the key, I think it’s just so much better when people just like, let go of that need to label and put a pin or a box around something that’s different. Like, that’s always been, what I’ve thought is that, you know, all the the other 24 Kids and Liam’s class, not only did they, what they learned from Liam, both what they understood from the teacher about differences, and this is like the school now, amazing, inclusive, supportive everything, but you know, he was in a bad situation and kids get in bad situations and bad school districts. And, you know, it’s it imposes so much on the other students whose challenges aren’t visible, you know, and it, it teaches them lessons that that might take a long time to undo, you know, it instills fear that doesn’t need to be there that nobody needs to carry. Right. And I think that sort of societally, like, a lot of life is, is zero sum, meaning, there isn’t necessarily for every winner, there isn’t a loser, right? Like, there’s no competition, there shouldn’t be competition, it doesn’t matter that Liam’s in the classroom. For the kid next to his spot in the on the softball team, like, there’s just this competitiveness that we feel all the time around us that like, I need my kid to have every possible thing place for the best outcome. And that means every kid next to him is gonna go to an Ivy League school. And you know, the basketball team is gonna win state and everything needs to be the best because he has to be the best. It’s like,
53:30
No, you know, you know, they’re the kid next to you, is fine, right? Like, you don’t need to step on him to get higher like, it’s, it doesn’t need to be nothing needs to be at the expense of anyone else. Right? You can, you can have a good education, and not have to have someone have a worse education. So you get a better education.
53:53
Can we talk a little bit about ableism? I mean, I think we have but we can we can be more more direct? Yeah. Can we can we define what ableism is? Because I feel like it’s not it’s it’s also something that that our community participates in.
54:09
Yeah, so I’m not the expert on this. Again, I don’t identify as having a disability. But it’s sort of important to be an ally and name these things, that there’s sort of this expectation and sort of norm of being able bodied, and sort of those that are not able bodied, as you know, society defines it have to go out of their way. And there’s often segregation and challenges that one that does not have this, quote unquote, able bodied face, sort of, you know, similar to how, you know, sort of these other isms racism, sexism, homophobia, sort of create sort of segregation or obstacles that some groups have to face because the majority the normal people
55:00
Have quote unquote,
55:02
have things a certain way. And they have to do things differently. So let’s just not change everything. Let’s just make one of those like stair climbers instead of putting in an elevator, right that those kind of challenges that a disabled person faces because the world is made for non disabled people.
55:21
I would say I was kind of rambling at the beginning. That’s my definition, you know, the challenges that disabled people face because the world is made for non disabled people. There’s nothing wrong with expanded definitions. I like that one. That last sentence, though, that’s a very comp. Yeah. When you catch when you catch the thing that actually makes sense, you got it, you gotta
55:39
say it again. Is it ableism when a student with a disability is segregated into like another event that’s made for those individuals with disabilities instead of being included in
55:56
like, Okay, so the team has a football team. But we’re not going to include individuals with a disability,
56:04
except in that towel position or that waterboy position. But we can make a separate team or we can make a separate something for them at the school. When Kaden Cox actually his team, he was a kicker for his team, his school is college, his community college, and they actually sent him into the games with a helmet on. So nobody knew he had Down syndrome, all the other team. And also he kick an extra point. Like, that’s inclusion, right, like giving him the opportunity to have the full experience. And he, he actually, he was running back for a player to remember he gets stopped at the one yard line and didn’t get in into the status so upset, you know, but they, they stopped him, they stopped him. I mean, you don’t see that when someone with Down syndrome gets on the field, you see a lot of flopping and just letting the kid score nine yard touchdown. So that was a really neat thing. I when you start talking about football, I’m so glad he brought up Caden, because in my mind, I go well, I guess there’s special circumstances when their safety involved of something, you know, but yeah, Caden is a perfect example of being in a contact sport and going 100% along with your opponent going 100%. And I think it’s great that someone gives you the opportunity if you want to be waterboy. But if you want to actually play that opportunity to train that opportunity to try out like everyone else should be there, the opportunity to try and fail should be there. Yeah, no, I agree. And I sort of as a Special Olympics, Coach, I have these discussions a lot about sort of, you know, we’re oftentimes a team of just people with developmental disabilities playing other people, just developmental disabilities, and is that inclusion, is that right? And I think part of it is to recognize that it is good to have spaces where you’re with your people, right? You know, we see it for all other marginalized groups, it’s good to be able to feel comfort and safe in your group of friends with Down syndrome, where you don’t have to,
58:12
you know, act differently, or feel like you’re out of place. So I’m stealing this anecdote anecdote from Tim Shriver, who runs or is the president of Special Olympics, and he’s, you know, a Kennedy and whatnot. And he said that his wife, coaches, a unified basketball team or some sports, so it’s got people with developmental disabilities and people without, and the folks on the team with the developmental disabilities go to the bar themselves after the game. And they don’t, they probably invite the they want to be by themselves, you know, they want to be with their people at that time. And it’s good to have both opportunities to have, you know, it wouldn’t be looked at differently in the black community or in the LGBTQ community to have your space. So I think it’s important to recognize that the goal isn’t everything is inclusive, right? You know, if the Down Syndrome club should be the people with Down syndrome, right, like, you know, it doesn’t, it’s okay to have your folks.
59:14
But when it comes to sports, I think there’s this interesting issue that like,
59:20
people with Down Syndrome and intellectual disability in development, Special Olympians, like they like sports more than their peers. Right? So like,
59:30
there isn’t.
59:33
The skill level becomes out of whack at some point, where like, when you’re little kids, everyone has no skill, so there’s no issue. But then as you get older, the kids that are good play, contact football, and they’re good and they beat each other up. And the kids that don’t like football don’t have any qualms about not playing. They’re like I don’t like football. Why would I want to play football, and then we have our population they’re like, I love
1:00:00
All right, there isn’t that like that pure group that that is at the center athletic ability, right? You know, sort of, we’ve got all of these athletes with special needs that like love to play. But this sort of inclusive parallel folks that would be at their skill level are not playing sports anymore. They’re doing their other hobbies. So we’re sort of left with this imbalance of the only people to play the sports with are really good at it. Because especially in adulthood, if you’re playing basketball in your 40s, you’ve been playing basketball for 35 years, and you’re probably pretty good. Because if you are bad, why are you playing basketball when you could be in a knitting circle or a book club. So they’re just like, I feel like the issue to inclusion in sports is that we need more people with a variety of skill level playing sports, like with and without disability, it’s just that there isn’t that spectrum of
1:00:54
people that may not be excellent softball players that like to play softball. And it’s hard because, you know, people within this party love playing sports, but it sort of is oftentimes not inclusive, or, you know, sort of this this
1:01:13
not real inclusion, because I don’t want a high schooler kid to both like play at their peak potential against Liam right, you know, that’s an unfair competition. But the kids that Liam could play football competitively with are probably doing things that are playing sports. So sort of trying to find a way to
1:01:38
find activities where sort of skill levels can be equal.
1:01:43
Which is a challenge, because you know, I have 62 year olds on my basketball team that I don’t know any 62 year olds to play basketball, except from Special Olympics, right? Like we were peak athletes, you know, we’re, but what’s the competition that’s inclusive? For that group? And it gets kind of hard. What do you see with the teams that you have, through Special Olympics that are, what do you call them, when there’s a unity is what you call them unified. And
1:02:10
when it’s really little kids, I think it’s perfect. And everyone plays and everyone plays hard. And also, a lot of times with siblings, it’s like a really good mix.
1:02:21
And then sort of like, I think there’s some good high school stuff where the
1:02:27
players really play, you know, like, a lot of times, you know, you’d see the person without the disability is just kind of a facilitator or just kind of like, there to pass the ball to the, to the person with the disability. And some places do it better than others. But a lot of times, it really isn’t a cohesive team, right, it’s sort of volunteers and athletes on the court together, and, you know, just sort of, if I have an open three point shot, I’m gonna shoot it. But like, a lot of times in this these situations, you know, it’s about getting the athlete, you know, the people with the disabilities involved in the chance to play which
1:03:10
it doesn’t necessarily need to be like that, because that’s not how you play the sport. You know, I think that there’s something lost when you’re sort of passing to the wrong team. And you know, like, like, just, it’s, it’s not right with me to it, it’s still not inclusive, right. Like, if if the players without the disabilities aren’t really playing, they’re just sort of assisting.
1:03:34
But it’s hard again, because there’s, like, you know, the kids that like to the high school kids that like to volunteer with sports, like Special Olympics are usually good at sports. Right, and they could dunk on my head, or, you know, like, the thing could be really good. And, you know, it’s hard to know, that limit of how hard I should play.
1:03:55
But, you know, I think that the more normalized this is, the easier that will get to be.
1:04:02
It’s, it’s tough, it’s tough. I think that the ideal is that, like, you know, we sort of have seven basketball teams based on skill level, and we have enough people that to mix and match with disability and not disability, and you’re sort of sorted by your skill level. And ideally, at the lower skill levels, it won’t just be people with disabilities, and at the highest skill levels, it just won’t be people without disabilities, but sort of, you know, trying to put your star running back on the same team, as, you know, someone that just loves football, but has never played in their life and has Down Syndrome and, you know, it’s not, it could never be truly inclusive, because
1:04:46
it’s just not the same skill level, like, you know, I can’t, you know, be inclusive if, you know, the Boston Red Sox put me on the team, but like, I would be way out of place and that’s okay.
1:05:01
I feel like when we’re talking about that, because I feel like it just it’s because it’s at the beginning, beginning. And, you know, you just you just said like, I’m not saying that in high school, Liam should decide like, yeah, if we haven’t if he hasn’t played football all this time, you know, if we haven’t played football, I don’t expect him to go in and play football. They’re still the standard that to me, that to me is the problem of, you know, I get it. I, I’m so torn because honestly, I watched those videos. And I’m like, I get it.
1:05:38
It’s beautiful. But in my mind, I’m like, did you give that kid an inclusive classroom? Did you support give him the support they needed to access his curriculum? Did you support him? Did you include him in the ability and opportunity to train as an athlete? Like, what else? Like, was he playing football? Is he playing football Very little was, you know, where was he included along the way, because I don’t expect Liam to like his sophomore year to walk in and be like, I want to play football, if I want to be a part of the team. And they’ll allow me to like help, because there’s a lot of people on the sidelines that aren’t football players, but also do not have a disability. Like if that’s the job that he wants, then absolutely. But But I think that it’s like, whenever I watched those videos, and it happened to Liam at a track meet when he was in first grade, first grade, after they had actually denied him his supports, had had been found guilty of discrimination against him, he actually had to redo first grade because he did not receive an education at all. And at the end of the school year, they tried to say, well, he should be taken off curriculum because of their lack. But when he got on the track to run that lap around and
1:06:56
run the race, even though he’s not included in PE, so he doesn’t have the opportunity to train, he doesn’t have the opportunity to train like other kids.
1:07:06
Everybody was caught cheering his name. Now I’m watching him like, and, and I was going to be tough. I’m like they better. But you know, knowing I knew the work he put into it to run that lap, right? I knew what it meant for Liam’s body to not stop once, when other kids had, I knew that he motivated other kids to run faster, because he was there running. But there was part of me that was so mad at the fact that everybody was rejoicing in this great thing that they’re doing cheering for my son, when what they really could have done was invited him to a birthday party, played football with him and included him on the field after school because he’s got a heck of an arm. I mean, there are things that can be done that then when he goes out, and he wants to play football, that note which he I don’t know, if you don’t think Liam wants to play football. But if he does that, yeah, of course, because he’s had the same opportunity to learn and fail and grow and, and read, decide if that’s what he wants, as the other kids who have worked really, really hard. Because it’s not fair to the kids who have worked really, really hard as well to just go, You know what, we’re gonna do this? Well, it took him longer to get around that track. And people cheered the entire time and made them feel really good. It may have taken him longer to learn his times tables. But people didn’t take the time to let Liam get his timetable times tables and cheer him along the hallway because it didn’t make them feel good. And so there’s this this, this place I was at to where I was like, Wait, like, I was almost like, you can’t cheer like Where were you before? Like, where were you with all the other aspects of his life, like, especially that were on a school campus, but it also it’s like, then they they gave him the gold medal in the metal. And when he came in, he couldn’t stop it. She was just like, and she just gave first place got kid a metal then the other three kids that came in third and fourth, got got ribbons, and then here comes Liam, and I’m expecting to get the ribbon and she couldn’t help herself. She’s like, Oh, but she wasn’t. But you can’t. And then that one was like, but the
1:09:20
thing is a little kid who won, who had been included, who had like, worked really hard is the fastest kid and he was the fastest kid, which is kind of hard when you’re in first grade because those kids run so Bozo the whole way. He came up and he pulled on my leg and he said, But Miss I won. And I said, I know you did. I know you did. And so that’s how like what does he feel? What did he feel in that moment? What did he lose? And I don’t? I don’t think that that that’s part of the conversation. It was hard. I mean, how do you simmer down he didn’t even want the metal he went he was like I traded it in for a ribbon. I was like hey bud. You
1:10:00
We’re gonna trade this in because he won, and he was happier to have the ribbon, I don’t even like, I don’t think it mattered either way to him, because he just liked running. I think that these in these scenarios like, it can be both, right? Like, we can both have this feel good moment where Liam runs around the track, and everyone cheers for him.
1:10:24
But they could also, you know, he could also work really hard. And everyone recognizes that he works hard, and he could contribute to the team and he could earn it right like, there is that, you know, with the water man or the towel boy, like, that person can be integral to the team and do a great job. And this is the reward, letting them fulfill their dream, it’s hard to say if that’s the case, based on a 32nd SportsCenter clip, you know, and you hope, it’s the second one where this this the student has been talking his whole life, about my only dream is that the score a touchdown, and then they work so hard to support the team then, like, that’s earned, right? Like, that kid deserves that.
1:11:04
But you don’t know, when you just see the new story.
1:11:09
And then, you know, it can be, you know,
1:11:13
you know, I see it with with my specialty, like, they love getting their medals, and they’ve got 100,000 medals, they get six medals a year, right. And it’s like, just such joy, that it’s almost hard to deny it, right. And it’s a joy that I wouldn’t feel if I got medals that often. Right, and that, you know, it’s it’s something about the disability and the intellectual component to it that like, that joy, you want to see and feel and be a part of, right, like, having a little kid I see that joy, and it’s gonna go away, because that’s just what happens, it’s just that becomes standard, but to see, like, the excitement, that my athlete gets getting their 75th Gold Medal, it’s like, I wish I could have that, right. And I want to see that and feel that because it is just such pure joy that, you know, it’s it is, you know, a gift to have that ability to experience that type of joy. And, you know, people recognize that and, you know, you don’t want to do it at the expense of, you know, others or like making this kind of hallmarking moment, but it’s it’s just the truth that that especially you know, it once you get to adulthood, like kids have that joy to but like to just see, you know, 45 year old athlete wearing their metal into work the next day, and they won six medals that year, it’s like really like, a Tuesday, like, it’s just a normal day to get a medal. But it’s just, like, so important to give people that moment, I get it, I think that there’s that part about sort of, you know, using them and, you know, giving, you know, sort of going for the Hallmark moment and not really having them incorporated. But, you know, I can see that that joy can be undeniable for for a lot of people to want to give someone that moment where they can experience such joy, like the other towel, boy is not going to feel like that, if they let him into scored touchdown.
1:13:20
which sort of makes it tough, because it is just so nice to see that type of joy in the world, right. And it sounded like Liam, maybe wasn’t super into traffic, maybe it’s not his dream to score a goal, because he sounded very mature to be like, you know, I’ll take the ribbon, but there are a lot of a lot of kids that, you know, that is the highlight of their life. And to see that it’s just, it’s nice to see people have like, the best moment in their life, and I don’t fault people for embracing that. I absolutely agree. And after, you know, speaking with learning about how Special Olympics was created, and really what was behind that inclusion and lifting, every you know, every athlete up and it didn’t only start just for, you know, individuals necessarily like at the ground roots with disabilities. My and I think like when you’re talking to me about that all I can think I don’t, I don’t know.
1:14:20
I can imagine being 45 with Down syndrome, what maybe that might have meant, like what that journey is, I can imagine that when you maybe don’t get so many wins and opportunities in your life. You know what I mean? It’s that same thing about finally getting a voice of like, I’m not allowed to be educated. If people look at me with pity all the time. If if you’re 45 You’ve heard the R word a lot. If you nobody expects me to get married or day or drive or none of this. And you have the opportunity to prove that you can do something it’s literally you’re proving to the world and probably to yourself. I can do
1:15:00
something right. And I honestly think it’s beautiful and wonderful and, and I and you know, you’ve shed some light onto like, yeah, people need to be able to be, you know, in their group where they can like vent like you have a moms group you have, you know, you have every group that you can vent. But I think there’s so many externals, I think there’s, there’s such societal challenges and limits that are put on. And like you said, the evolution, I think it’s changing, but that have been historically put on our community. And I mean, from the, the institutionalization and, and you know, what people did to fight for idea and the 504, you know, and they were denied bathroom access to bathrooms, individuals with disabilities, were denied access to bathrooms, while they were trying to fight for fight for the individuals Disability Education Act. And so it’s nothing against the opportunities that are there, and the celebration, because I get that celebration where you’re just like, but I think that that can’t be it for society, society can’t rely on this one time of year, when society gets just as much out of it. You know, every volunteer there is like, this is amazing. Anybody that I’ve ever spoke for, as a volunteer spoke to as a volunteer for Special Olympics, it’s rewarding. But I think that there has to be other there has to be other things like it just can’t. It’s like, it’s like Liam’s track me, it can’t just be we’re gonna go out and cheer for him when he runs around the court, you know, which is great, because honestly, it’s elementary school, they cheered for everyone. Right? So but it can’t just be that, right? It has it has to come. Like we have to acknowledge that this is a total person. And maybe if that person was given the opportunities in school, maybe if they were receiving those supports, maybe if they had a job where their peers looked at them as equal, then maybe that metal and maybe when they walked in, and they had the metal on, people didn’t talk to them, talk down to them or pander to them. Maybe if if there was just a big shift
1:17:22
in the in in viewing that then there would be a little bit more perspective. And there would be change because there’d be other things, which I do believe. I do believe those are becoming available to our community. Well, it reminds me of and I’m not sure where this fits, but it reminds me of a softball team, Laurie and I used to be on and in Hollywood, there’s a Hollywood league where every TV show has or has an opportunity to field a softball team within the league. And whatever show we’ve been on, it’s always gonna do a softball league, right? So they’re looking for you need a certain amount of players to show up every Saturday or Sunday. So you’re really not real, like you want really good players, but you don’t have a big mix of people you’re pulling from you know, but and you also there’s always this thing of I want some of the actors on there. I want some, you know, he got some grips that can hit the homers but you like what I kind of want. So you do have teams in this league that are just stacked. But there’s also teams it’s like, man, we gathered enough people to play and you have to have a minimum of, of different genders to so you’re just you’re looking for a real group of people that just happen to work together. And let’s have a weekend game together. So, man, you’re going to one one time in our league we won one game out of I think it’s a 10 game season. won one game that win was epic for us. It was huge.
1:18:48
We celebrated so much from that one when those nine losses we had a great time in those nine losses. Laurie got a couple of of game balls. Right she was the catcher I remember the twice there was a foul ball and she dove and bucket list was our bucket list because and I am not athletic. Well no, that’s not true. You’re not you are athletic and I only bring you up because out of our group.
1:19:14
You were the one that you were like I don’t I just don’t play right but I could probably feel disposition and learn this position in the moment. And there were some things that I feel like I put I was the captain like put me on third I’m ready like that’s that’s my spot because I know it’s a difficult spot but I’m confident in my game. Well, I made mistakes. I didn’t feel the ball ball winners my legs or I didn’t hit a base hit and and well we just played right well, Laurie maybe didn’t feel the ball or didn’t hit the ball and get the first base but hey, we played but then she’d make these plays that we could celebrate too, and maybe made a little more impact to us because it was we probably were like hey Laurie probably hadn’t had a lot of these diving catches, you know, I’m saying
1:20:00
And so her highlight this is part of her highlight reel. And we can, like you said, Eric, we can have both we can, we can enjoy each other in the moment with wins and losses. And we can know that we’re all there just playing the game. And of course, there’s going to be teams that when they lose, they’re mad, they’re upset, they may be playing a little rough, they may be trying to, you know,
1:20:32
use strategies that are not totally legit. That’s just sports. But then you’ve got teams that are like, Hey, we’re having fun. I’m gonna shake your hand after you win or lose, I’m going to be upset. I’m gonna be Yeah, I’m gonna be a little down if I lose, but I can lose and still play the game and have camaraderie and joy. And so I don’t know where that fits in this, but that is like the most inclusive sport. I think everybody should have that opportunity. I think that I do think I do. Absolutely. Yeah, no, I do. Absolutely. Go ahead. I didn’t mean to interrupt. No, that’s it can happen. I think your Go ahead. And the other thing that we kind of forget is that people have their strengths, right. We’re talking about kind of like our conventional American sports. But if you play bocce ball or bowling, especially Olympians will destroy you, you will lose so quickly in bocce ball, right? Like, it’s not about physical endurance is not about this is not about you know, jumping or throwing, it’s like, they played 50 years of budget, they’re like it is it’s got nothing to do with the things that make you good at football, right? Like it’s, we can shift the perspective to the slightly more naturally inclusive sports because some of this stuff isn’t inclusive period, right? Basketball, if you’re really short. It’s not the most inclusive, you can play but it’s like not made for you. Right, like, a lot of this stuff doesn’t work for all types of people.
1:22:05
But there are some things that do and then sort of the playing field is completely even. And like that’s kind of where the real inclusion happens. I think where
1:22:14
it’s your skill level is the gate. It doesn’t matter and, yeah, that they’ll some of those things. You know, I think a Bochy, like it’s amazing that wizards that is so good at Bochy is like, you know, if I if if people cared about high school Bochy, like they did about high school football, then, you know, our, our community would be getting scholarships to college based on their Bachi ability. That’s awesome. I didn’t know why do you think that is? Well, so bad, she is like, like, kind of in the spirit, but like, pi bowling is also a really big one, where, like, it’s just an activity, you can go, you know, you spend time, you know, it’s just something to do, and then you do enough of it, and you just get good, you know, like, it is just an hour’s thing. You know, I worked at camps and programs and for kids with disabilities, we would always go bowling. Like it’s just a good thing to do with you know, when you have to have hours filled at a camp or something. So there’s just a lot of bowling and Bachi which,
1:23:19
which is you know, we got wringer. We got people that can
1:23:23
that can really play.
1:23:26
Well, we just talked to Brady Murray, who has a son with Down syndrome, and at his high school, he was the champion. Was it waterbottle toss, like, well, you flip the flip. Because, you know, obviously, it’s something that you can get a knack to do and you work hard and it pays off and you get it and maybe another kid didn’t work that well or everybody can kind of start with like today, right there. Is there the gifted you know, was I was like, it was my jeans. You know, I just was born to be a bottle flipper. I don’t know, like, like, it’s not as much as like, the Peyton Manning, whose dad was a quarterback and is six, six and yeah, right. Right. Right, right. It’s even Chris nicot in the triathlon. Right, like that’s,
1:24:13
I mean, there’s a lot of skill to do that, but it’s really just about mental fortitude, and doing it, which probably half a percent of the population could do what he did, but he didn’t have any. He didn’t need any Headstart, right. He just did it. Whereas a lot of the things that we value in terms of sports and knowledge and stuff, you have to have a leg up to, to sort of get that acclaim that we’re talking about. I’m ready for the narrative to switch to where people understand the benefit and the work and the ability of individuals with Down syndrome. Because until that is seen, they’re still going to be externals that put limits on our community and our children.
1:25:00
And that really, you know, push their lives in a certain direction. But once once that ability and that equality is there to really understand, so we can, you know, break free of those misperceptions and those stereotypes. I remember in an actually, it was the same IEP. And when Liam was in first grade, and I remember they, you know, there was a real hard push from kindergarten to just pull them off curriculum. And we weren’t ready, we were like, we’ll let Liam tell us when he’s where he’s going to cap out. And they were just saying, like his communication, even though every morning he’d walk in, and he wasn’t completely expressive, because we found out he wasn’t getting his speech therapies. But every morning, he’d walk in, and he’d signed to his teacher, thank you for being my teacher, every morning. And when he’d leave, he tell her to have a good day. And thank you for being my teacher. And she never even learned how to sign. Good morning. Like, she never learned how to sign back to him. And they were there was this hard Porsche about what he couldn’t do. And I was just like, my son has learned a second language to communicate with you, all of you.
1:26:14
He’s actually learned a second language.
1:26:18
Have you? You say, he can’t communicate with you. But he’s been working really hard. It’s you who aren’t communicating, it’s you who aren’t meeting him, and seeing him is able, and I think that when, when those other things are let go of our children, and this community will have the ability to have like, all of like to just be to just be where like, even though like the littlest, when isn’t everything, where where they just can be and and enjoy. And it’s not such a surprise, or it’s not there? Isn’t this like drive to have to prove who you are? I mean, that must be exhausting. I think I asked your research group that question before, it just must get exhausting always having to prove yourself.
1:27:09
Yeah, and I would, I would say to you, that you really like it’s crucial to think larger than Down syndrome with that issue,
1:27:20
are like, extremely structural. And, you know, not to be too political. But it’s capitalism, right, you know, you need to make the widgets. And if you can’t make the widgets, it doesn’t matter, right. And there are a lot of people that can’t produce to the extent that our economy wants them to, and at this point in time that’s deemed to be, you go to a shelter workplace, you’re a burden to the social safety net. And that’s not just Down syndrome, that’s, that’s millions and millions of Americans, and it’s going to take some huge structural legislative perceptional changes to, to get through that. And it’s not just going to be downstairs, it’s got to be everybody working together to move that needle to sort of, sort of just emphasize that there’s more value than just your economic productivity. Because everyone feels that, you know, like, they judge themselves about how much they’re getting paid, and whether they’re doing a good job. And you know, that that system will never work for everybody. It just, it just can’t, because
1:28:32
the way we judge success
1:28:36
is not the same, right? Like just having someone with Down syndrome in the office.
1:28:43
That should be enough if they can sort of contribute what they can, but then you don’t want to pay them a full wage, because you can hire someone that could do that. And also, you know, code, your computer is like all of that stuff that is just going to be hard to overcome without big legislative changes. If you want someone in your office who can code as well, then don’t pull my child off of curriculum when he’s in kindergarten, teach a math and teach them to code. And you’re right, it’s about being that it’s not just people with Down Syndrome who have this situation, but sometimes this on this journey, you’re made to feel like it is. And there’s this kind of a freedom there to, to,
1:29:28
to deny that equality with no
1:29:34
respect to any kind of consequence. You know, and, and I think that’s, that’s it, like, if everybody understood, we’re all equal, and it doesn’t just just because you have an extra chromosome, that you are less equal or less able, in in this full spectrum, that that is that is perceived.
1:29:57
You know, I think that is the challenge. That’s a challenge that that we
1:30:00
experience, that’s a that’s what we go up against all the time where I’m always like every children, every child is different. Every child has challenges. You know, it’s it’s how we perceive, and what we’re what we’re
1:30:13
I think it’s just what society thinks they can get away with what what the
1:30:18
district thinks they can get away with that has been determined and, and kind of, you know, led by there was a moment in time when all of our children were institutionalized taken away from their parents. And, you know, there was a story told that, you know, if you keep that it’s going to ruin your your whole family structure, you know, and that was a result of the Industrial Revolution, that was a result of, hey, people need to make more, they need to have a value they need to be able to contribute. You think we got smarter as we, as we, as we, as a society are becoming more able and having like all of this evolution, and I think we just need to be smarter and understand, like, that’s the thing that’s missing, we need to understand in society that that’s what’s missing. What’s missing is that we all think we’re separate, and that we judge others to be less than us. And I don’t, I’m hopeful, I’m hopeful for the change. And I’m hopeful because of everything that you’re doing, that there will be that change. And you want to talk about having someone on your group where you have to say, all right, that was a nice tangent, but let’s get that’s what he experiences all the time with me. He’s always he’s like, Where were you going?
1:31:33
No, this is a fantastic conversation. It really is always great talking with you, too. I know, we went over our Eric, it’s always I just love talking to you. Because you have, I love your point of view. And I just I wish people had that same point of view, I wish more people had that. I always bring it back to inclusion. And I do believe it’s because you are the product of inclusion. I mean, I also like, get paid to think about this stuff. You know, I spent a lot of time, you know, just just thinking, you know, like a lot. If I had a real job, I, I wouldn’t have the time to spend so much time just being wonky about these types of things. But I love I love chatting with you both. Well, it shows a great evolution of society that you are able to get paid to do that, that and this is what you chose to think about and that the money is there for this research and that, you know, this is available, because like you said, if the money wasn’t there, the research wouldn’t get done. And it is a credit to folks like yourselves who are advocating and sort of demanding research into the you know, like it’s shifted to want research, like my research and it would not have been possible without the the advocates and the families and individuals to push research in this direction. We appreciate you. Thank you. Yeah. How to your family. Yeah, thank you and give give my regards to your kids as well. And let’s chat again soon.
1:33:02
Take care. Bye bye.
1:33:06
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If We Knew Then - A Down Syndrome Advocacy Podcast 